The XLH Network, Inc Email Format
Wellness and Fitness ServicesNew York, United States2-10 Employees
A global patient support organization for people living with X-Linked Hypophosphatemia (XLH) and related phosphate-wasting disorders, like autosomal hypophosphatemia and Tumor Induced Osteomalacia. In 1996 a college student in Minnesota connected online with a man in England whose wife and children have XLH, and with a man in British Columbia whose son had a spontaneous case. All of them were looking for help on the internet, and from this connection The XLH Network was founded in November, 1996 as an international volunteer group of people affected by or interested in XLH, or X-Linked Hypophosphatemia. Today we're incorporated as a 501(c)(3) charity, making all donations tax deductible to the fullest extent allowed by law. We are the first organization in the world specifically dedicated to XLH. The XLH Network, Inc. helps thousands of people around the world who are affected by or interested in XLH and related phosphate-wasting disorders. Our website provides information to people around the world with up-to-date information on diagnosis, treatment and the very latest research. Membership in the Network is growing daily, and members have available to them a variety of tools that help connect patients with each other, and with clinicians and researchers as well.